Greetings everyone! It’s about that time for another 24 page novel update. Since I last checked in, things have still been going comparatively well. The effort it takes to speak has gotten harder but not by much. The chewing has improved (I think – unless the brain is just that powerful). There are still no swallowing issues. The constant twitching remains an annoyance and reminder of the disease. Lack of sleep and stress are by far the two biggest symptom accelerators. I currently have an incredibly large cocktail of daily pills that would put Charlie Sheen to shame. I had another appointment with Dr. Sufit at Northwestern on Thursday September 5th. My FVC (Forced Vital Capacity – breathing test) actually increased from 97% to 99%, which was a great sign. You should see me turning blue blowing so hard into that darn machine. I am so competitive, I would much rather pass out and be rushed to the hospital than get 1% lower than I’m humanly capable of scoring (granted, the hospital is only about 17 feet away). The nose clips they use for the test have now become my potato chip bag clips. I’m hoping the reality that these clips were used on my nose will keep people out of my chip bags. Speaking of, I was told to eat eat eat…. Lots of high monounsaturated and polyunsaturated (good) fats and high fiber foods. I was told I would be losing weight from my constant body twitching (much to the jealousy of all you wishing to lose weight). So I ate. And ate. And I certainly did not lose weight. I’ve gained a couple sizes and my suits have been almost rendered useless. In fact, it’s gotten so bad, that at a recent wedding my whole fly zipper just busted right open on the dance floor. Not one of my finer moments on this Planet Earth.
Various clinical trials have been on the forefront of our minds and choosing which ones to pursue is like guessing which Kardashian is now pregnant. You just have no idea. A couple of them? All of them? At the end of last week, we went to Grand Rapids, MI for clinical trial screening for a new drug GSK has developed. Dr. Gelinas is the clinical researcher they have chosen to conduct this trial site, and she is highly renowned in the ALS community. Listening to her explain how the drug worked reminded me why I never took Chinese class. Thank god Lindsay was a molecular and cellular biology major. I passed all the long testing, poking and prodding for the trial, and we are strongly considering enrolling. The main concerns are a 1:1 placebo ratio (50% chance I get placebo), 48 week trial (lengthy) and the need to drive to 2.5 hours to Grand Rapids every 2 weeks for a 4 hour Intravenous infusion. You are free to voluntarily drop out of any trial, although it does not look good when future clinicians recruit you for their trials. We have yet to make a final decision but we liked hearing Dr. Gelinas’ general thoughts. She was amazed at how well I was still doing 6.5 months into this. She agreed with the 1 year barometer for determining the rate of disease progression, but she also gave us a new 5 year barometer to shoot for. She confirmed what we had heard, that my ‘bulbar onset’ of ALS definitely has cases (albeit rare) where the disease stays confined to ‘bulbar’ symptoms for eternity, and never spreads to the limbs and ultimate death. She said that if it hasn’t spread to the limbs in 5 years, she would opine that it likely never will spread. The criteria she gave for her rare patients that never have ALS spread to the limbs were 1. Male 2. Young 3. Physically fit/Healthy 4. Strong FVC (Breathing) scores 5. No separate cognitive impairments and 6. Mentally Strong/Good spirit/Enjoy life. 1. Check 2. Check 3. Check 4. Check 5. Debatable 6. Check.
Now, the part that I was excited to write about. We had a fundraising event Saturday September 7th in downtown Chicago. Excuse my language, but holy sh*t. I could never have anticipated the turnout we had for it. We sent out no email invites and simply posted the event on my website and Facebook and the final tally was over 250 people. From high school and college friends I haven’t seen in years, to family, neighbors, co-workers, industry friends, parents of friends, siblings of friends, golf buddies, employees from my gym (unreal), friends of friends….. it was one heck of a party and one of the coolest nights I’ve had in my life. We had people in town from Denver, Portland, New York, D.C., among others. I had no idea what to expect, but it was definitely not that. The pre-event anxiety quickly dissipated. There was only room for 130 on the rooftop so I apologize that many of you never made it up there. We all mingled on both levels, but I also apologize that I did not get to talk to many of you for the length I had hoped. Just know that I can’t tell you how much I appreciated the support; it was very humbling to say the least and overwhelming in an awesome way. The silver lining is many people I saw there I probably would never have seen again for the rest of my life if it wasn’t for this diagnosis. I’m keeping the glass half full.
Please keep checking the website for more wild parties fundraising events we will be having in the future. The goal, first and foremost, is to have a great time and keep the costs low; but also to raise some money in the interim. We have a Barn Dance fundraiser on December 7th that is still in the works…. From what I know so far, it sounds like it is going to be an absolute blast, so I encourage you all to come (we are looking into providing transportation options there and back). There is a psychologically uplifting element every time I have fun with you all, so come for that if nothing else.
Remember to live well, love hard and laugh often. Life is waaaay too short to be unhappy.